the roller coaster journey of raising autistic kids

Autism Sleeping Problems

We have been struggling with V’s sleeping patterns for almost two years now. And he is only 2 years and 8 months old! As an infant, we did not notice anything different, he basically did what every infant does; he slept, ate, pooped, slept, ate, pooped, slept, ate… you get the picture! When he was about 9 months old we started teaching him to fall asleep alone. We used the same “super nanny” methods we had used on JA but they did not seem to work. He just jumped up and down in his crib – sometimes for hours – without falling asleep. We did not know what to do but as long as he was happily playing in his crib and eventually fell asleep on his own, we were not too concerned. The problems started for real when he turned two and became too big for his crib.

Like always, he had difficulty settling down and now that he was in a normal bed, this meant that he was constantly crawling out of bed. We tried every trick in the book but nothing worked. As he grew older it became worse and at first we did not realize why. But as his sleep during the night constantly decreased, we saw that his daily nap in the kindergarten became longer and longer, sometimes even reaching 4 hours! It was as if he was compensating for his lack of sleep during the night with his daytime nap.

We talked about it with the kindergarten and asked them if they could help us with this problem by waking him up. Unfortunately their answer surprised us. They were absolutely firm on their policy of never waking up the children. This they based on studies that indicate how important naps are for children. We tried telling them that his daily naps were beginning to affect his night sleep to the extent where he was not falling asleep until 10 or 11 pm and then waking up around 6:00 am but they were unwavering.

During summer vacation 2011 we managed to reduce V’s sleep substantially down to approximately one hour a day, something much more normal for a 2 year old, and as a result, his night sleep became much better although it still took him quite long to fall asleep. But as soon as summer vacation was over it all went back to the old patterns.

Since then, we’ve had several meetings with the nursery about this problem without any significant change. We have asked them if he could just let him stay awake and NOT nap during the day (he usually does not nap on weekends or holidays and seemingly without affecting him but it substantially helps with his night sleep) but they are not fond of that idea. And while the current situation continues, our V is so restless when it is time for bed that he cannot calm down and fall asleep. And since it usually takes about two hours (and sometimes more) it is cutting out our quality time as a couple.

It does not help much that our other son, JA, usually wakes up around 6:00 am which leaves us with two bad choices. Postpone going to sleep until late in order to get some quality time together and then be tired in the morning due to lack of sleep, or skip our quality time and go to sleep early in order to not be sleep deprived the day after. An ideal situation huh!?! Frankly, this has been going on for so long that it has come to the point that we are about to give up. We desperately need something to change.

After researching online it is clear to me that sleeping problems are common in autistic individuals. Apparently, children with autism have been found to sleep less at night than other children. Further, it is common that they have unusual routines for settling to sleep and may sleep walk or have more nightmares than other children.

One article by Dr Avril Brereton particularly caught my attention. She states: “The sleep difficulties reported in children with autism include problems with: Sleep onset and maintenance, irregular sleep-wake patterns, poor sleep, early waking, alterations in sleep onset and wake times and night waking.” She goes on: “The sleep-wake cycle is a circadian rhythm (light-dark cycle) but humans also use social cues to entrain circadian rhythms. For example, social cues and routine are thought to help infants develop the pattern of having the longest sleep at night (as for the rest of the family). For children with autism, it may be that the social and communication difficulties they have are influencing their ability to “read” the social cues and understand the instructions about going to bed and sleeping…”

I have been looking around for solutions and since I would like to prevent medication if possible I have been looking for a natural way to solve this. What I have found is that many parents of autistic children suggest that people try Melatonin, a naturally occurring compound found in animals, plants, and microbes. Interestingly, when I looked it up on Wikipedia I found this:

“In humans, melatonin is produced by the pineal gland, a small endocrine gland located in the center of the brain. […] The melatonin signal forms part of the system that regulates the sleep-wake cycle by chemically causing drowsiness and lowering the body temperature. […] Individuals with autism spectrum disorders (ASD) may have lower than normal levels of melatonin. A 2008 study found that unaffected parents of individuals with ASD also have lower melatonin levels, and that the deficits were associated with low activity of the ASMT gene, which encodes the last enzyme of melatonin synthesis. Multiple small studies have demonstrated that 2 to 10 mg of melatonin may benefit children with ASD who have trouble falling asleep and/or maintaining sleep.”

Well, I guess I have just found my next destination: The doctor’s office…

If you have any experience with how to tackle sleeping problems of autistic children or have tried Melatonin it would be very interesting to hear your thoughts on that. All comments are very well appreciated.

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All sounds so familiar. Our son Riley never seemed to require much sleep when he was little either. He was different than most autistic kids in that once he fell asleep, he slept well. It was the “getting” to sleep that was difficult for him/us. As you say, having a 2 year old stay up until 10 or 11 at night is very tiring. When he was around 5 or 6 we tried him on melatonin. It was a miracle! :) Within 30 minutes of giving it to him, he would be asleep!!! At that time, melatonin wasn’t available in Canada over the counter. Lucikly I was able to get some from the US fairly easily. He hasn’t been on it for 3 or so years now (he is almost 18). He has been able to get to sleep on his own but not to sure if that’s just because by 15, staying up until 9:30-10:00 is pretty typical.

Melatonin worked for Riley. I would suggest checking with your son’s doctor before trying it though.

Thank you so much for your comment!
Your story is exactly the same as mine in the sense that sleeping is not the problem but FALLING asleep is. As for now, Melatonin is not allowed over the counter neither here in Denmark nor in Iceland where I’m from. But I’m meeting up with our doctor tomorrow and hope that she’ll be ok with trying it for a short while. If it works, it will completely change our family routine so I’m crossing my fingers that it will work as well for my Viktor as it did for your Riley ;)

We have never heard of this, ours are very tricky but for us it is routine routine and more routine no late nights dinner bath every night without fail, never missed a bath short amount of BORING TV then bed in an entirely dark room black-out blinds fixed to the wall with heavy curtain on top it is completely dark … and silence we don´t run a bath or flush a loo until they have been asleep for an hour , we kept them in the cot until the age of 4 we used to have terrible problems getting them to bed and for about 6 months (after a holiday almost our only holiday) one woke up every day at 4.45 am. Here in Iceland our older one never slept at playschool he was 2 … now at 9 it is ok he lies in the dark talking to himself and wakes at 6 but we can doze as he amuses himself but I do feel chronically sleep deprived and have done for years I am sorry it is hard maybe the Melatonin is the answer Good luck …

I always fought giving anything at bedtime to help C sleep at night. Recently he’s had a number of difficulties – more than having his Service Dog by his side – so we decided to try melatonin. It has been a lifesaver! He has 6mg about an hour before bed and it allows him to relax and get to sleep at a normal time. No residual effects in the morning. We occasionally do forget to give it at night and the result is that he can’t get to sleep. It’s as black and white as that in our house now! I do not ever let our supply run out!! :) Good luck!

Thank you so much for your comment Jennifer. I have always fought this idea of taking something for sleep but this sounds entirely different to me and it is so encouraging to hear success stories and hearing how much it changes everything. I hope the same will go for us. Thank you :)

Hi Ragga :) My name is Nicole and I just found your blog. My husband and I have a 3 year old son who is on the autism spectrum. Our son’s doctor recommended Melatonin and it has been wonderful. We were recommended to give it to our son about 20 minutes before bed time and it has really helped him naturally have a better pattern of falling asleep. Every now and then he still wakes in the middle of the night, but melatonin really helps with the falling asleep part. Talk to your doctor about it! I really hope it helps, I know how tough it is not to have any quality time b/c your kid can’t calm down and sleep. It is stressful! Goodluck!!! :)

Thank you for commenting and sharing this Nicole. I’m becoming increasingly optimistic and excited about this. It will completely turn around the family dynamics if it works. Let’s just hope! Thank you :)

Hi Ragga, I haven’t tried melatonin but I have been tempted. My boy is now 5 and he is finally in a pretty good pattern. Tried a lot of different techniques but have found that a ‘sound machine’ has been quite helpful in getting him to sleep. The one I have has a range of different sounds from white noise to a heartbeat to gentle rain. We have all been sleeping better and I don’t know about the kids but I’m addicted! It’s incredibly relaxing.

Sound machine – never heard of such a thing but it sounds interesting. I have an app on my phone that I’ve tried using that has gentle sounds of a little river but V doesn’t seem to respond to that at all – but maybe I should try something more advanced like you… Thank you for the suggestion ;)

Hi my 2 son’s are autistic cameron age 7 and liam age 3 they both have sleeping difficulties but my oldest has been diagnosed with a sleeping disorder and is on melatoning as off just recently,as he haven’t sleept properlly for the last 2 yrs. He’s on 2mg so far,but it doesn’t seem 2 be wrking! So his peadiatrician is now going 2 higher the dosage,honestlly we tried everything possible but now has had 2 resort 2 medication as nothing seem’s 2 wrk for them.

Wow, it must be so difficult for you. We’ve only been struggling with this problem with our younger son and he is only 2 years old so I feel for you. It makes me a little less hopeful, to be honest, to hear that Melatonin has not been working for him so far. I hope it will with a higher dosage. Best wishes for better sleep in the future!

I know I am a little late to comment, but just wanted to chime in again about the miracle of Melatonin. We started my son on it when he was 3, and it was magical. In the U.S. you can get it from GNC in a dissolveable format, and its cherry flavored, so no need to crush up or fight over a pill. We gave it to him very faithfully for 6 months, and it was magical. After the 6 month we tried not giving it to him, and it was fine, his body had finally got in a good sleep pattern, and we no longer had issues. It has now been almost 2 years, and both his life and mine have changed by sleeping through the night. For those of you out of the country I would try GNC.com, or probably even Amazon.com. Good luck everyone, it is such a hard thing we are dealing with!

Yes, I heard about this cherry flavored type and it sounds just perfect for my little monkey boy as he loves his vitamins cherry flavored :) …however, we are still waiting for our doctor’s allowance as we prefer to have that before trying anything. But after that we might well check GNC out. Thank you so much.

I have a 10 year old daughter who has Asperger’s and has a lot of difficulty getting to sleep. I have three recommendations that have helped us. 1. A sound machine which makes a “white noise” to block out other sounds. These machines are used in doctor’s offices a lot. 2. A weighted blanket. Somehow deep pressure helps to relax kids with autism. 3. Melatonin. We started on a small dose of Melatonin each night and it has helped her relax and drift off to sleep within 25 minutes. Good luck!

Thank you! I’ve heard about those sound machines and have yet to check them out. Further, we just decided to try such a weighted duvet but I don’t know what they’re called in English (in Icelandic it’s “kúlusæng”). And we are still waiting to talk with someone who has permission to prescribe Melatonin as it is not possible to boy over the counter here in Denmark.

I am so glad that I found your blog Ragga, it´s been really informative to read it. We are an Icelandic family living in NY. Egill, who is almost 3 now, was diagnosed with Autism in September. I only recently heard about the association between sleeping problems and autism. I just thought we were not doing this right. I will definitely try Melatonin.

I am also glad that you found my blog. We parents of autistic children can share so much information and often help each other out. I hope you are getting good service for Egill in NY. Are you planning on staying in the States or you think you’ll move back to Iceland at some point?

We´re not sure if we will go back or not. NY has good service for autistic children, probably about the best service in the US. From what we hear the service in Iceland is not very good at the moment, but we haven´t really looked into that very thouroghly (we might think about going back in few years). Egill has been reciving ABA, Speech, Ocupational and physical theraby since Nov.1st. At first we saw alot of progress but then he regressed again. After reading your blog I would say that Egill is very similar to Viktor. We are confident that he will eventually speak. But he also has the two language issue, which makes things a bit more difficult for him. Egill will go to specialiced school for autistic children from September, where he will be in a classroom of 8 with 3 teachers. And all the services is payd for by NYC. There also seems to be alot of knowledge on autism in NY, less misconceptions than in many other places.

Well, it sounds like you are in the right place for him and that you are getting a lot of support without having to pay for it. That is definitely a plus! ;) …I hope everything will work out well for you and Egill. Just remember to take care of yourselves as well, both individually and as a couple! ;)

Would you mind if we stayed in touch? Maybe via Facebook? It’s always so nice to have someone who shares similar experiences – especially when it comes to your kids…

My daughter is autistic and almost 6. Like you we did not encounter a real problem until she outgrew the crib. Since then it has been a nightmare. She quit napping completely when she was about a year old. She then started having seizures and the medication they put her on helped her sleep. She slept wonderfully and went a year without seizures. That being said we took her off the medication when she was about 3. Since then it has been a nightmare unfortunately. She does not nap. We established a regular routine putting her to bed at 7pm. She messes around until midnight, sometimes 1 am. Once she does fall asleep she wakes frequently, every hour almost which is filled with tantrums where she will destroy her room. We have pulled everything out of her room except for her mattress in hopes that will help but as of yet it has not, instead of ruining her belongings she has kicked holes in my walls and through doors…… we are at a loss of what to do. The melatonin will help get her to sleep but it does not keep her asleep at all so for us, it does not work very well. I swear our doctor thinks we are nuts so we are trying to figure out a way to put a camera in her room overnight in a location where she can clearly be seen but cannot get to it. The goal is to be able to record the issue so we can figure out what the deal is and get some answers because the exhaustion is literally wearing us so thin it is causing major issues in all areas of our lives.

Oh my this sounds horrible. Our problems sound like a kids play compared to yours! And still I was at the limit of tolerating it any longer. You must be tired in every cell of your bodies! I think the camera idea is a good one and you should try to do it as soon as you can. Also, (although I’m sure you have tried pretty much everything but I still want to point it out as suggestions) have you tried, soothing bath oils, weighted blankets and/or other relaxing methods that work in some cases?

i my son is 2 years 8 months, when he naps during the dat it is for 2-4 hours , at night he doesnt have a problem to fall a sleep but he is very restless, talikng its like he is still at school and around 1 he wakes up crying and performingm, he is still breastfeeding dont know if that is he problem but the lack of not sleeping for 2-3 hours in the morning really drains him cause he cant get up in the morning cant even open his eyes. pls help

Our son Dylan is now 5 and his sleep is all over the map. Some nights he’ s up for a couple of hours like last night it was 1 am to about 3 am. It totally effects me and my husband because one has to be with him. We use melatonin and it seems to get to fall asleep but our problem is keeping him asleep. He still takes a snap in the afternoon and we know we should keep him up but sometimes you just need a break from the energizer child. He’s on the spectrum with with dev delays and one being he doesn’t talk yet. Very frustrating as other parents know and I think what keeps us all going is the hope the some day he will. He’s got about 5 words but not consistent about using them spontaneous. I’m just about ready to discuss what else we can do with his ped dr because its now effecting my ability to focus and work. I’m just tired all the time.

I feel for you, this must be so difficult. But in regards to his afternoon nap, I do realize that it can be a nice break momentarily but is it possible that he is not sleeping well enough during nights because of it? So My question would be, which is better, a short break during the afternoon or a good nights sleep? Of course I’m not able to put myself in your steps completely but I would reckon that the latter would be of more importance in the long run. Am I right?

Superb blog you have here but I was curious if you knew of any user
discussion forums that cover the same topics discussed here?
I’d really love to be a part of online community where I can get feedback from other experienced individuals that share the same interest. If you have any suggestions, please let me know. Cheers!

I tried Melatonin…and I found that it did nothing to help my son sleep….in fact it made him feel sick…we are just about to see the ASD nurse and I want to ask her about something else…my son has not slept at all in the last 3 days and we are all exhausted…

our daughter has an issue with “staying” asleep – she’s on the spectrum and is 7. So we finally gave in and tried Melatonin tablets – 1 mg or 2 mg… about 1/2 the time she’d still wake around 3am raring to go – jumping on her bed, playing cd’s loudly. We tried timed release melatonin spray that helped her classmates – but it worked less. So now we are working on her diet thru the Brain Balance program – the nutritionist said that her system may work out the sleep issues if her gut was more balanced. See my blog: http://www.songsforlexi.com/apps/blog
So I would advise to try Melatonin, but the packaging mentions that it’s meant to bring back normal sleep habits and I did a bunch of online research about long term effects and there are no studies on that yet. Also know some friends with older kids say their kids outgrew sleep issues of the early years… good luck…

I have an autistic 3.5 year old son he was just diagnosed in October of this year… He has never really slept even in the womb… We have been given him children’s Benadryl since the age of 2… That quit working… About February of this month we started melatonin… Little help… It more or less makes him take a long nap (4 hours about) and then he is up the rest of the night… He will usually just be good and play in his room (iPad, Netflix from the Wii, toys) but I don’t sleep any better knowing my baby is up and I am half dead to the world… His father says he sleeps fine at his house (seperate over a year divorced 6 months) but his father doesn’t agree with the autism diagnoses and tells me nothing regarding our sons behavior… I’ll try and let you know what my doctor says on Friday

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